Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

07-07-2017 | Original Paper

Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs

Auteurs: Jennifer L. Hillman, Michele C. Wentzel, Connie M. Anderson

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 10/2017

Abstract

Limited information is available regarding the first person perspective of grandparents of children with Autism Spectrum Disorders (ASD). In the present study, 1870 grandparents of a child with ASD participated in a nationwide, online, anonymous, 30-minute survey and responded to open-ended questions including their “greatest challenges and greatest joys” as the grandparent of a child on the autism spectrum. A grounded theory approach to qualitative analysis revealed four overarching categories: a Desire for Connection, Barriers to Care, Celebration of Progress, and Personal Reactions. Despite the presence of significant challenges grandparents often experienced positivity in their role, and engaged in radical acceptance of their grandchild as well as transformative insight and advocacy. Specific recommendations are offered to help address grandparents’ needs and capitalize upon their resilience.

vorige artikel Provision of Genetic Services for Autism and its Impact on Spanish Families

volgende artikel Coparenting Competence in Parents of Children with ASD: A Marker of Coparenting Quality

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders. (5th ed.). Arlington, VA: American Psychiatric Publishing.CrossRef

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2012 Principal Investigators. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries/CDC, 65(3), 1–23.

Bayat, M. (2007). Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research, 51(9), 702–714.CrossRefPubMed

Bruns, D., & Foerster, K. (2011). ‘We’ve been through it all together’: Supports for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55(4), 361–369.CrossRefPubMed

Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage.

Curtain, C., Hubbard, K., Anderson, S. E, Mick, E., Must, A. et al. (2015). Food selectivity, mealtime behavior problems, spousal stress, and family food choices in children with and without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 45(10), 3308–3315.CrossRef

D’Astous, V., Wright, S., Wright, C., & Diener, M. L. (2013). Grandparents of grandchildren with Autism Sectrum Disorders: Influences on engagement. Journal of Intergenerational Relationships, 11(2), 134–114. doi:10.1080/15350770.2013.782744.CrossRef

DePape, A., & Lindsay, S. (2015). Parents’ experiences of caring or a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. doi:10.1177/1049732314552455.CrossRefPubMed

Dyches, T. T., Christensen, R., Harper, J. M., Mandleco, B., & Roper, S. O. (2016). Respite care for single mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46, 812–824.CrossRefPubMed

Fuchs, Hl. C., Haradhvala, N., Evans, D., Nash, J. M., Weisberg, R. B., et al. (2016). Implementation of an acceptance and mindfulness-based group for depression and anxiety in primary care: Initial outcomes. Families, Systems, & Health, 34(4), 386–395.CrossRef

Gosling, S. D., Vazaire, S., Srivastava, & John, O. P. (2004). Should we trust web-based studies? A comparative analysis of six preconceptions about internet questionnaires. American Psychologist, 59(2), 93–104.CrossRefPubMed

Gouze, K. R., & Wendel, R. (2008). Integrative module-based family therapy: Application and training. Journal of Marital and Family Therapy, 3(3), 269–286.CrossRef

Gray, D. (2003). Gender and coping: The parents of children with high functioning Autism. Social Science & Medicine, 56, 631–642.CrossRef

Hamlyn-Wright, S., Draghi-Lorenz, R., & Ellis, J. (2007). Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism: The International Journal of Research and Practice, 11, 489–501.CrossRef

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642.CrossRefPubMed

Hillman, J. (2007). Grandparents of children with autism: A review and recommendations for.education practice, and policy. Educational Gerontology: An International Journal, 33(6), 513–527.CrossRef

Hillman, J., Marvin, A., & Anderson, C. (2016). The experience and contributions of.grandparents of children with autism spectrum disorders. Journal of Intergenerational Relationships, 14(2), 76–92.CrossRef

Hodge, D., Hoffman, C. D., Sweeney, D. P., & Riggs, M. L. (2013). Relationship between children’s sleep and mental health in mothers of children with and without Autism. Journal of Autism and Developmental Disorders, 43(4), 956–963. doi:10.1007/s10803-012-1639-0.CrossRefPubMed

Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with Autism. Journal of Child Psychology and Psychiatry, 45 (2), 212–229.CrossRefPubMed

Hutton, A. M. & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20 (3), 180–189.CrossRef

Kelly, G. A., & Lazarus, J. (2015). Perceptions of successful aging: Intergenerational voices value well-being. The International Journal of Aging and Human Development, 80(3), 233–247.CrossRefPubMed

Mansonn, D. H. (2016). The joy of grandparenting: A qualitative analysis of grandparents. Journal of Intergenerationsl Relationships,14 (2), 135–145. doi:10.1080/15350770.2016.1160738.CrossRef

Margetts, J. K., Le Courteur, A., Croom, S. (2006). Families in a state of flux: The experience of grandparents in autism spectrum disorder. Child: Care, Health, and Development, 32, 565–574.

Minjarez, M. B., Williams, S. E., Mercier, E. M., & Hardan, A. Y. (2011). Pivotal response group treatment programs for parents of children with autism. Journal of Autism and Developmental Disorders, 41, 92–101. doi:10.1007/s10803-010-1027-6.CrossRefPubMed

Myers, B. J., Mackintosh, V. H., & Goin-Kochet, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684.CrossRef

Nimeus, A., Traskman-Bendz, L., & Alsen, M. (1997). Hopelessness and suicidal behavior. Journal of Affective Disorders, 42(2), 137–144.CrossRefPubMed

Risdal, D., & Singer, G. H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29(2), 95–103.CrossRef

Seligman M. E. P., & Csikszentmihalyi, M. (2000). Positive psychology: An introduction. American Psychologist, 55, 5–14.CrossRefPubMed

Shallcross, A. J., Gross, J. J., Visvanathan, P. D., Kumar, N. P., Palfrey, A., et al (2015). Relapse prevention in major depressive disorder: Mindfulness-based cognitive therapy versus an active control condition. Journal of Consulting and Clinical Psychology, 83(5), 964–975.CrossRefPubMedPubMedCentral

Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38, 876–889.CrossRefPubMedPubMedCentral

Strauss, A. L., & Corbin, J. M. (2008). Basics of qualitative research: Techniques and procedures for developing grounded theory (3rd ed.). Thousand Oaks, CA: Sage.

Sullivan, A., Winograd, G., Verkuilen, J., & Fish, M. C. (2012). Children on the autism spectrum: Grandmother involvement and family functioning. Journal of Applied Research in Intellectual Disabilties, 25, 484–494.CrossRef

Trute, B., Worthington, C., Hiebert-Murphy, D. (2008). Grandmother support for parents of children with disabilities: Sex differences in parenting stress. Families, Systems, & Health, 26(2), 135–146.CrossRef

Vismara, L. A., McCormick, C., Young, G. S., Nadhan, A., & Monlux, K. (2013). Preliminary findings of a telehealth approach to parent training in Autism. Journal of Autism and Developmental Disorders, 43, 2953–2969. doi:10.1007/s10803-013-1841-8.CrossRefPubMed

Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health:The mediating role of acceptance and empowerment. Autism, 16(3), 261–274. doi:10.1177/1362361311422708.CrossRefPubMed

World Health Organization. (2017). Autism spectrum disorders: Fact sheet. Retrieved on May 21, 2017 from http://www.who.int/mediacentre/factsheets/autism-spectrum-disorders/en/.

Wright, S. D., D’Astous, V., Wright, C. A., & Diener, M. A. (2012). Grandparents of grandchildrenwith autism spectrum disorder (ASD): Strengthening relationships through technologyactivities. International Journal of Aging and Human Development, 75(2), 169–184.CrossRefPubMed

Zickuhr, K., & Madden, M. (2012). Older adults and internet use: For the first time, half of adults ages 65 and older are online. Washington, DC: Pew Internet & American Life Project.

Zlomke, K. R. (2009). Psychometric properties of internet administered versions of Penn State Worry Questionnaire (PSWQ) and Depression, Anxiety, and Stress Scale (DASS).Computers and Human Behavior, 25(4), 841–843.CrossRef

Titel: Grandparents’ Experience of Autism Spectrum Disorder: Identifying Primary Themes and Needs
Auteurs: Jennifer L. Hillman
Michele C. Wentzel
Connie M. Anderson
Publicatiedatum: 07-07-2017
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 10/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-017-3211-4

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 10/2017

Provision of Genetic Services for Autism and its Impact on Spanish Families

Quality of Life, Coping Styles, Stress Levels, and Time Use in Mothers of Children with Autism Spectrum Disorders: Comparing Single Versus Coupled Households

Parental Outcomes Following Participation in Cognitive Behavior Therapy for Children with Autism Spectrum Disorder

Coherence of Representations Regarding the Child, Resolution of the Child’s Diagnosis and Emotional Availability: A Study of Arab-Israeli Mothers of Children with ASD

Patterns of Age-Related Cognitive Differences in Adults with Autism Spectrum Disorder

Vicarious Effort-Based Decision-Making in Autism Spectrum Disorders